Barbara Daly - Academia.edu (original) (raw)

Papers by Barbara Daly

Research paper thumbnail of Preferences for Quality or Length of Life: An Analysis of Patients with Advanced Cancer and Their Family Caregivers Prior to Death (S715)

Journal of Pain and Symptom Management, Feb 1, 2017

Research paper thumbnail of Genetic Variation Near chrXq22-q23 Is Linked to Emotional Functioning in Cystic Fibrosis

Biological Research For Nursing, 2020

Introduction: Cystic fibrosis (CF) is an autosomal recessive disease that affects many organ syst... more Introduction: Cystic fibrosis (CF) is an autosomal recessive disease that affects many organ systems, most notably the pulmonary and gastrointestinal systems. Through genome-wide association studies, multiple genetic regions modifying CF-related pulmonary and gastrointestinal symptoms have been identified, but translation of these findings to clinical benefit remains elusive. Symptom variation in CF patients has been associated with changes in health-related quality of life (HRQOL), but the relationship between CF symptom-modifying genetic loci and HRQOL has not been explored. The purpose of this study was to determine whether two previously identified genetic modifiers of CF-related pathology also modify the subscales of HRQOL. Methods: HRQOL and genotype data were obtained and analyzed. Linear regressions were used to examine the amount of variance in HRQOL subscales that could be explained by genotype for each modifier locus. Results: A significant regression equation was found b...

Research paper thumbnail of On Best Interests

Journal of Hospice & Palliative Nursing, 2019

Surrogate healthcare decision-making is often a challenge for everyone involved. In the case of i... more Surrogate healthcare decision-making is often a challenge for everyone involved. In the case of incapacitated patients, family members, nurses, healthcare providers, and other members of the healthcare team often grapple with determining the most appropriate clinical course of action. For these difficult patient scenarios, the expertise of clinical ethics consultants are sought to assist with complex healthcare decision-making. Clinical ethics consultation is designed to provide a more objective "outside" opinion and offer advice to the patient, family, and entire care team to support and guide decisions. Nurses are well positioned to initiate assistance from Clinical Ethics Consult Services in support of patient and family advocacy. This article presents a case analysis based on the Stakeholder, Facts, Norms, and Options Framework to analyze the best interest course of action for Mr. K, a patient diagnosed with abdominal pain due to end-stage liver cirrhosis and lacks decisional capacity in regard to his own treatment decision-making. The case analysis highlights specific examples of how nurses can provide information, facilitate discussion, and otherwise support patients and families to achieve best interest outcomes.

Research paper thumbnail of Educating Nursing Scientists: Integrating Genetics and Genomics into PhD Curricula

Journal of Professional Nursing, 2019

Nursing science is a diverse field of study, the scope of which has broadened to more fully incor... more Nursing science is a diverse field of study, the scope of which has broadened to more fully incorporate genetics and genomics. In recent years, these topics have become focus areas for many nursing researchers. However, recent evidence suggests that doctoral level nursing students and nursing faculty may be underprepared to conduct independent research using genomic approaches. Furthermore, genetics and genomics are severely underrepresented in doctoral level nursing curricula across the United States. This article suggests a thorough, yet manageable three-part curriculum designed to educate doctoral level nursing students on genetics, genomics, and their use in nursing science. Recommendations are then given for the integration of the curriculum into existing nursing PhD programs.

Research paper thumbnail of Effect of nurse-led randomised control trials on cardiovascular risk factors and HbA1c in diabetes patients: A meta-analysis

Diabetes Research and Clinical Practice, 2017

This is a PDF file of an unedited manuscript that has been accepted for publication. As a service... more This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. Effect of nurse-led randomised control trials on cardiovascular risk factors and HbA1c in diabetes patients: a meta-analysis

Research paper thumbnail of Randomized clinical trial of a community navigation intervention to improve well-being in persons living with HIV and other co-morbidities

Aids Care-psychological and Socio-medical Aspects of Aids/hiv, Nov 15, 2018

Long-term survival of people living with HIV (PLWH) is associated with the development of comorbi... more Long-term survival of people living with HIV (PLWH) is associated with the development of comorbid conditions and need for symptom management and other efforts to enhance quality of life. We conducted a longitudinal, randomized trial over 36 months to evaluate the effect of a community-based navigator intervention to provide early palliative care to 179 PLWH and other chronic conditions. Outcomes included quality of life, symptom management, coping ability, social support, self-management, and completion of advance directives. Data were analyzed using SAS mixed effects model repeat measurement. Our navigator program showed variable improvement over time of three outcome variables, self-blame, symptom distress, and HIV selfmanagement. However, the program did not improve overall quality of life, social support, or completion of advance directives.

Research paper thumbnail of Preparing advanced practice nurses for acute care

American Journal of Critical Care, 1994

BACKGROUND: As a result of changes occurring in healthcare, providers have become increasingly sp... more BACKGROUND: As a result of changes occurring in healthcare, providers have become increasingly specialized, resulting in fragmented care of patients and their families. With these changes, the need has developed for professionals who possess both advanced clinical decision-making ability and expanded psychomotor skills to serve as case managers in collaboration with physicians. As a result, evolving and innovative roles for advanced practice nurses have developed in American hospitals. The development of such roles, within the acute care hospital environment, has led directly to the creation of graduate programs to prepare acute care nurse practitioners. OBJECTIVE: This article describes the efforts to develop a specific graduate program to prepare nurses as acute care nurse practitioners. These efforts include the needs assessment, curriculum and role development, implementation, and evaluation of the program. RESULTS: Phase 1 evaluation showed significant support for acute care nu...

Research paper thumbnail of Examining the Association between Item Specific Treatment Burden and Adherence in People Living with HIV

Western Journal of Nursing Research, 2019

For the 1.1 million people with HIV (PWH) in the United States, adherence to a HIV anti-retrovira... more For the 1.1 million people with HIV (PWH) in the United States, adherence to a HIV anti-retroviral medication regimen, engagement in regular physical activity, and eating a healthy diet are essential for maintaining optimal health. However, treatment burden can increase the risk for self-management non-adherence. We analyzed data of 103 men and women diagnosed with HIV to examine the relationship between medication, physical activity, and diet-related treatment burden to corresponding measures of self-management adherence. Multivariate analysis demonstrated that one medication treatment burden item explained 11% (p=.01) of self-reported 30-day HIV anti-retroviral medication adherence; physical activity treatment burden, along with physical functioning, explained 25% (p<.001) of physical activity, measured by daily average steps; and diet-specific treatment burden was non-significant in maintaining a healthy diet, measured by a total Healthy Eating Index-2010 score. Findings demon...

Research paper thumbnail of Multimorbidity With HIV: Views of Community-Based People Living With HIV and Other Chronic Conditions

The Journal of the Association of Nurses in AIDS Care : JANAC, Jan 12, 2017

People living with HIV (PLWH) experience an increase in chronic conditions with aging, but little... more People living with HIV (PLWH) experience an increase in chronic conditions with aging, but little is known about experiences of living with multimorbidity with HIV. Because early palliative care services may improve well-being for individuals with multimorbidity, we planned to test an intervention to provide these services to community-dwelling PLWH with other chronic conditions. To tailor our intervention to the target population, we conducted four focus groups (n = 22) that elicited health-related needs, experiences, and views regarding palliative and other health services. We identified four themes related to patients' needs and experiences: views of HIV as background to other chronic conditions, challenges managing medications and provider interactions, concerns about coping with future health needs, and persistence of HIV stigma. In addressing multimorbidity with HIV, providers and patients may benefit from enhanced attention to communication when crossing specialty areas a...

Research paper thumbnail of Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions

The Journal of the Association of Nurses in AIDS Care : JANAC

People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic med... more People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic medical conditions. Health policymakers recognize the role of early palliative care and advance care planning in improving health quality for at-risk populations, but misperceptions about palliative care, hospice, and advance care planning are common. Before testing a program of early palliative care for PLWH and other chronic conditions, we conducted focus groups to elicit perceptions of palliative care, hospice, and advance care planning in our target population. Overall, participants were unfamiliar with the term palliative care, confused concepts of palliative care and hospice, and/or associated hospice care with dying. Participants misunderstood advance care planning, but valued communication about health care preferences. Accepting palliative care was contingent on distinguishing it from hospice and historical memories of HIV and dying. Provision of high-quality, comprehensive care wi...

Research paper thumbnail of The Etiology and management of radiotherapy-induced fatigue

Expert Review of Quality of Life in Cancer Care, 2016

Fatigue is one of the most common side-effects accompanying radiotherapy, but arguably the least ... more Fatigue is one of the most common side-effects accompanying radiotherapy, but arguably the least understood. Radiotherapy-induced fatigue (RIF) is a clinical subtype of cancer treatment-related fatigue. It is described as a pervasive, subjective sense of tiredness persisting over time, interferes with activities of daily living, and is not relieved by adequate rest or sleep. RIF is one of the early side-effects and long-lasting for cancer patients treated with localized radiation. Although the underlying mechanisms of fatigue have been studied in several disease conditions, the etiology, mechanisms, and risk factors of RIF remain elusive, and this symptom remains poorly managed. The purpose of this paper is to review and discuss recent articles that defined, proposed biologic underpinnings and mechanisms to explain the pathobiology of RIF, as well as articles that proposed interventions to manage RIF. Understanding the mechanisms of RIF can describe promising pathways to identify at-risk individuals and identify potential therapeutic targets to alleviate and prevent RIF using a multimodal, multidisciplinary approach.

Research paper thumbnail of Donors After Cardiac Death: Validation of Identification Criteria (DVIC) Study for Predictors of Rapid Death

American Journal of Transplantation, 2008

Donation after cardiac death (DCD) is uncommon in part because clinicians cannot prospectively id... more Donation after cardiac death (DCD) is uncommon in part because clinicians cannot prospectively identify patients who are likely to die within 60 min of withdrawal of life-sustaining treatments (LST). UNOS criteria exist but have not been validated. Consecutive patients electively withdrawn from LST at five university-affiliated hospitals were prospectively enrolled. Demographic and treatment characteristics were collected. Chi-square was used to determine risk for death within 60 min and validate the UNOS criteria. A total of 533 patients were enrolled. A total of 28 were excluded from this report due to age <18 years or failure to include time of death. Of 505 (95%) patients, 227 (45%) died within 60 min, 134 (27%) in 1-6 h and 144 (29%) >6 h after withdrawal of LST. A total of 29%, 52%, 65% and 82% of patients with 0,1,2 and 3 UNOS DCD criteria, respectively, died within 60 min of withdrawal of LST. The data validate the UNOS criteria. Patients with no criteria might be excluded from consideration for DCD. Those with more than one criterion are reasonable candidates, while those with a single criterion should be considered if a 50% failure rate for DCD is acceptable.

Research paper thumbnail of Complexity Analysis of Decision-Making in the Critically Ill

Journal of Intensive Care Medicine, 2016

Rationale: Despite multiple trials of interventions to improve end-of-life care of the critically... more Rationale: Despite multiple trials of interventions to improve end-of-life care of the critically ill, there is a persistent lack of understanding of factors associated with barriers to decision-making at the end of life. Objective: To apply the principles of complexity science in examining the extent to which transitions to end-of-life care can be predicted by physician, family, or patient characteristics; outcome expectations; and the evaluation of treatment effectiveness. Methods: A descriptive, longitudinal study was conducted in 3 adult intensive care units (ICUs). Two hundred sixty-four family surrogates of patients lacking decisional capacity and the physicians caring for the patients were interviewed every 5 days until ICU discharge or patient death. Measurements: Characteristics of patients, physicians, and family members; values and preferences of physicians and family; and evaluation of treatment effectiveness, expectations for patient outcomes, and relative priorities in...

Research paper thumbnail of When Patients Do Not Have a Proxy: A Procedure for Medical Decision Making When There Is No One to Speak for the Patient

The Journal of Clinical Ethics

Research paper thumbnail of Associations between Symptoms with Healthcare Utilization and Death in Advanced Cancer Patients

Introduction: There is limited data about assessments that are associated with increased utilizat... more Introduction: There is limited data about assessments that are associated with increased utilization of medical services among advanced oncology patients (AOP). We aimed to identify factors related to healthcare utilization and death in AOP. Methods: AOP at a comprehensive cancer center were enrolled in a Centers for Medicare & Medicaid Innovation program. Participants completed the Edmonton Symptom Assessment Scale (ESAS) and the Functional Assessment of Cancer Therapy – General (FACT-G) scale. We examined factors associated with palliative care (PC), acute care (AC), emergency room (ER), hospital admissions (HA), and death. Results: In all, 817 AOP were included in these analyses with a median age of 69. They were generally female (58.7%), white (61.4%), stage IV (51.6%), and represented common cancers (31.5% GI, 25.2% thoracic, 14.3% gynecologic). ESAS pain, anxiety, and total score were related to more PC visits (B = 0.31, 95% CI [0.21, 0.40], p < 0.001; B = 0.24 [0.12, 0.36]...

Research paper thumbnail of Longitudinal patterns of resource use in chronically critically ill

Research paper thumbnail of Stem Cell Transplant and Palliative Care: Joining Forces to Improve Survivor Quality of Life

Biology of Blood and Marrow Transplantation, 2020

Research paper thumbnail of Recruitment Strategies for Nurse Enrollment in an Online Study

Nursing Research, 2019

Background: While there is a great deal of literature regarding effective recruitment and challen... more Background: While there is a great deal of literature regarding effective recruitment and challenges of recruiting specific patient populations, there is less known about best practices for recruitment of nurses as study subjects. Objectives: The purpose of this paper is to report our experience with recruitment and retention for a randomized trial of an online educational program to prepare oncology nurses to discuss oncology clinical trials with patients. Methods: The study population included currently employed oncology nurses with direct patient interaction. There were three phases of this study: (1) qualitative interviews; (2) a pilot test; and (3) the randomized trial. Phase 3 was rolled out in five waves of recruitment. The distinct phases of the study-and the gradual roll out of recruitment during Phase 3-allowed us to test and refine our recruitment and retention methods for the randomized trial. Upon analysis of our response rate and attrition after the first wave of recruitment in Phase 3, we made several changes to improve recruitment and retention, including adding incentives, shortening the survey, and increasing the number of reminders to complete the program. Results: The response rate was higher when we used both email and U.S. postal mail solicitations. After the first wave of recruitment in the final phase, changes in our strategies did not increase our overall response rate significantly; however, the rate of attrition following baseline declined. Discussion: Recruitment planning is an important component of successful clinical research. The use of the Internet for both recruitment of subjects and testing of interventions remains a costeffective and potentially high yield methodology. Our research demonstrated several successful approaches to yield increased participation and retention of subjects, including seeking formal relationships with professional organizations as sponsors or supporters, providing meaningful incentives to participants, keeping surveys or questionnaires as short as possible, and planning multiple follow-up contacts from the outset.

Research paper thumbnail of Comparing cognitive load levels among family members of the critically ill exposed to electronic decision aids

Applied Nursing Research, 2019

Cognitive load predicts one's ability to process information and learn from decision support inte... more Cognitive load predicts one's ability to process information and learn from decision support interventions. The present study compared intrinsic and extraneous cognitive load levels resulting from exposure to two different electronic decision aids. A convenience sample of ninety-seven surrogate decision makers for critically ill patients were randomly assigned to receive either a single dose of a video-based or avatar-based decision aid. Intrinsic and extraneous cognitive load levels among recipients of the video-based decision support resource were lower than recipients of the avatar-based decision support resource. After controlling for age, the observed differences in intrinsic cognitive load were not significantly different, whereas the observed differences in extraneous cognitive load remained. Extraneous cognitive load is a modifiable factor to consider for future developers of decision support interventions that may determine the efficacy of efforts to support patients and family members with decision making.

Research paper thumbnail of Coping Strategies and Posttraumatic Stress Symptoms in Post-ICU Family Decision Makers

Critical care medicine, Jan 17, 2015

To assess the coping strategies used by family decision makers of adult critical care patients du... more To assess the coping strategies used by family decision makers of adult critical care patients during and after the critical care experience and the relationship of coping strategies to posttraumatic stress symptoms experienced 60 days after hospitalization. A single-group descriptive longitudinal correlational study. Medical, surgical, and neurological ICUs in a large tertiary care university hospital. Consecutive family decision makers of adult critical care patients from August 2012 to November 2013. Study inclusion occurred after the patient's fifth day in the ICU. None. Family decision makers of incapacitated adult ICU patients completed the Brief COPE instrument assessing coping strategy use 5 days after ICU admission and 30 days after hospital discharge or death of the patient and completed the Impact of Event Scale-Revised assessing posttraumatic stress symptoms 60 days after hospital discharge. Seventy-seven family decision makers of the eligible 176 completed all data ...

Research paper thumbnail of Preferences for Quality or Length of Life: An Analysis of Patients with Advanced Cancer and Their Family Caregivers Prior to Death (S715)

Journal of Pain and Symptom Management, Feb 1, 2017

Research paper thumbnail of Genetic Variation Near chrXq22-q23 Is Linked to Emotional Functioning in Cystic Fibrosis

Biological Research For Nursing, 2020

Introduction: Cystic fibrosis (CF) is an autosomal recessive disease that affects many organ syst... more Introduction: Cystic fibrosis (CF) is an autosomal recessive disease that affects many organ systems, most notably the pulmonary and gastrointestinal systems. Through genome-wide association studies, multiple genetic regions modifying CF-related pulmonary and gastrointestinal symptoms have been identified, but translation of these findings to clinical benefit remains elusive. Symptom variation in CF patients has been associated with changes in health-related quality of life (HRQOL), but the relationship between CF symptom-modifying genetic loci and HRQOL has not been explored. The purpose of this study was to determine whether two previously identified genetic modifiers of CF-related pathology also modify the subscales of HRQOL. Methods: HRQOL and genotype data were obtained and analyzed. Linear regressions were used to examine the amount of variance in HRQOL subscales that could be explained by genotype for each modifier locus. Results: A significant regression equation was found b...

Research paper thumbnail of On Best Interests

Journal of Hospice & Palliative Nursing, 2019

Surrogate healthcare decision-making is often a challenge for everyone involved. In the case of i... more Surrogate healthcare decision-making is often a challenge for everyone involved. In the case of incapacitated patients, family members, nurses, healthcare providers, and other members of the healthcare team often grapple with determining the most appropriate clinical course of action. For these difficult patient scenarios, the expertise of clinical ethics consultants are sought to assist with complex healthcare decision-making. Clinical ethics consultation is designed to provide a more objective "outside" opinion and offer advice to the patient, family, and entire care team to support and guide decisions. Nurses are well positioned to initiate assistance from Clinical Ethics Consult Services in support of patient and family advocacy. This article presents a case analysis based on the Stakeholder, Facts, Norms, and Options Framework to analyze the best interest course of action for Mr. K, a patient diagnosed with abdominal pain due to end-stage liver cirrhosis and lacks decisional capacity in regard to his own treatment decision-making. The case analysis highlights specific examples of how nurses can provide information, facilitate discussion, and otherwise support patients and families to achieve best interest outcomes.

Research paper thumbnail of Educating Nursing Scientists: Integrating Genetics and Genomics into PhD Curricula

Journal of Professional Nursing, 2019

Nursing science is a diverse field of study, the scope of which has broadened to more fully incor... more Nursing science is a diverse field of study, the scope of which has broadened to more fully incorporate genetics and genomics. In recent years, these topics have become focus areas for many nursing researchers. However, recent evidence suggests that doctoral level nursing students and nursing faculty may be underprepared to conduct independent research using genomic approaches. Furthermore, genetics and genomics are severely underrepresented in doctoral level nursing curricula across the United States. This article suggests a thorough, yet manageable three-part curriculum designed to educate doctoral level nursing students on genetics, genomics, and their use in nursing science. Recommendations are then given for the integration of the curriculum into existing nursing PhD programs.

Research paper thumbnail of Effect of nurse-led randomised control trials on cardiovascular risk factors and HbA1c in diabetes patients: A meta-analysis

Diabetes Research and Clinical Practice, 2017

This is a PDF file of an unedited manuscript that has been accepted for publication. As a service... more This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. Effect of nurse-led randomised control trials on cardiovascular risk factors and HbA1c in diabetes patients: a meta-analysis

Research paper thumbnail of Randomized clinical trial of a community navigation intervention to improve well-being in persons living with HIV and other co-morbidities

Aids Care-psychological and Socio-medical Aspects of Aids/hiv, Nov 15, 2018

Long-term survival of people living with HIV (PLWH) is associated with the development of comorbi... more Long-term survival of people living with HIV (PLWH) is associated with the development of comorbid conditions and need for symptom management and other efforts to enhance quality of life. We conducted a longitudinal, randomized trial over 36 months to evaluate the effect of a community-based navigator intervention to provide early palliative care to 179 PLWH and other chronic conditions. Outcomes included quality of life, symptom management, coping ability, social support, self-management, and completion of advance directives. Data were analyzed using SAS mixed effects model repeat measurement. Our navigator program showed variable improvement over time of three outcome variables, self-blame, symptom distress, and HIV selfmanagement. However, the program did not improve overall quality of life, social support, or completion of advance directives.

Research paper thumbnail of Preparing advanced practice nurses for acute care

American Journal of Critical Care, 1994

BACKGROUND: As a result of changes occurring in healthcare, providers have become increasingly sp... more BACKGROUND: As a result of changes occurring in healthcare, providers have become increasingly specialized, resulting in fragmented care of patients and their families. With these changes, the need has developed for professionals who possess both advanced clinical decision-making ability and expanded psychomotor skills to serve as case managers in collaboration with physicians. As a result, evolving and innovative roles for advanced practice nurses have developed in American hospitals. The development of such roles, within the acute care hospital environment, has led directly to the creation of graduate programs to prepare acute care nurse practitioners. OBJECTIVE: This article describes the efforts to develop a specific graduate program to prepare nurses as acute care nurse practitioners. These efforts include the needs assessment, curriculum and role development, implementation, and evaluation of the program. RESULTS: Phase 1 evaluation showed significant support for acute care nu...

Research paper thumbnail of Examining the Association between Item Specific Treatment Burden and Adherence in People Living with HIV

Western Journal of Nursing Research, 2019

For the 1.1 million people with HIV (PWH) in the United States, adherence to a HIV anti-retrovira... more For the 1.1 million people with HIV (PWH) in the United States, adherence to a HIV anti-retroviral medication regimen, engagement in regular physical activity, and eating a healthy diet are essential for maintaining optimal health. However, treatment burden can increase the risk for self-management non-adherence. We analyzed data of 103 men and women diagnosed with HIV to examine the relationship between medication, physical activity, and diet-related treatment burden to corresponding measures of self-management adherence. Multivariate analysis demonstrated that one medication treatment burden item explained 11% (p=.01) of self-reported 30-day HIV anti-retroviral medication adherence; physical activity treatment burden, along with physical functioning, explained 25% (p<.001) of physical activity, measured by daily average steps; and diet-specific treatment burden was non-significant in maintaining a healthy diet, measured by a total Healthy Eating Index-2010 score. Findings demon...

Research paper thumbnail of Multimorbidity With HIV: Views of Community-Based People Living With HIV and Other Chronic Conditions

The Journal of the Association of Nurses in AIDS Care : JANAC, Jan 12, 2017

People living with HIV (PLWH) experience an increase in chronic conditions with aging, but little... more People living with HIV (PLWH) experience an increase in chronic conditions with aging, but little is known about experiences of living with multimorbidity with HIV. Because early palliative care services may improve well-being for individuals with multimorbidity, we planned to test an intervention to provide these services to community-dwelling PLWH with other chronic conditions. To tailor our intervention to the target population, we conducted four focus groups (n = 22) that elicited health-related needs, experiences, and views regarding palliative and other health services. We identified four themes related to patients' needs and experiences: views of HIV as background to other chronic conditions, challenges managing medications and provider interactions, concerns about coping with future health needs, and persistence of HIV stigma. In addressing multimorbidity with HIV, providers and patients may benefit from enhanced attention to communication when crossing specialty areas a...

Research paper thumbnail of Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions

The Journal of the Association of Nurses in AIDS Care : JANAC

People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic med... more People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic medical conditions. Health policymakers recognize the role of early palliative care and advance care planning in improving health quality for at-risk populations, but misperceptions about palliative care, hospice, and advance care planning are common. Before testing a program of early palliative care for PLWH and other chronic conditions, we conducted focus groups to elicit perceptions of palliative care, hospice, and advance care planning in our target population. Overall, participants were unfamiliar with the term palliative care, confused concepts of palliative care and hospice, and/or associated hospice care with dying. Participants misunderstood advance care planning, but valued communication about health care preferences. Accepting palliative care was contingent on distinguishing it from hospice and historical memories of HIV and dying. Provision of high-quality, comprehensive care wi...

Research paper thumbnail of The Etiology and management of radiotherapy-induced fatigue

Expert Review of Quality of Life in Cancer Care, 2016

Fatigue is one of the most common side-effects accompanying radiotherapy, but arguably the least ... more Fatigue is one of the most common side-effects accompanying radiotherapy, but arguably the least understood. Radiotherapy-induced fatigue (RIF) is a clinical subtype of cancer treatment-related fatigue. It is described as a pervasive, subjective sense of tiredness persisting over time, interferes with activities of daily living, and is not relieved by adequate rest or sleep. RIF is one of the early side-effects and long-lasting for cancer patients treated with localized radiation. Although the underlying mechanisms of fatigue have been studied in several disease conditions, the etiology, mechanisms, and risk factors of RIF remain elusive, and this symptom remains poorly managed. The purpose of this paper is to review and discuss recent articles that defined, proposed biologic underpinnings and mechanisms to explain the pathobiology of RIF, as well as articles that proposed interventions to manage RIF. Understanding the mechanisms of RIF can describe promising pathways to identify at-risk individuals and identify potential therapeutic targets to alleviate and prevent RIF using a multimodal, multidisciplinary approach.

Research paper thumbnail of Donors After Cardiac Death: Validation of Identification Criteria (DVIC) Study for Predictors of Rapid Death

American Journal of Transplantation, 2008

Donation after cardiac death (DCD) is uncommon in part because clinicians cannot prospectively id... more Donation after cardiac death (DCD) is uncommon in part because clinicians cannot prospectively identify patients who are likely to die within 60 min of withdrawal of life-sustaining treatments (LST). UNOS criteria exist but have not been validated. Consecutive patients electively withdrawn from LST at five university-affiliated hospitals were prospectively enrolled. Demographic and treatment characteristics were collected. Chi-square was used to determine risk for death within 60 min and validate the UNOS criteria. A total of 533 patients were enrolled. A total of 28 were excluded from this report due to age <18 years or failure to include time of death. Of 505 (95%) patients, 227 (45%) died within 60 min, 134 (27%) in 1-6 h and 144 (29%) >6 h after withdrawal of LST. A total of 29%, 52%, 65% and 82% of patients with 0,1,2 and 3 UNOS DCD criteria, respectively, died within 60 min of withdrawal of LST. The data validate the UNOS criteria. Patients with no criteria might be excluded from consideration for DCD. Those with more than one criterion are reasonable candidates, while those with a single criterion should be considered if a 50% failure rate for DCD is acceptable.

Research paper thumbnail of Complexity Analysis of Decision-Making in the Critically Ill

Journal of Intensive Care Medicine, 2016

Rationale: Despite multiple trials of interventions to improve end-of-life care of the critically... more Rationale: Despite multiple trials of interventions to improve end-of-life care of the critically ill, there is a persistent lack of understanding of factors associated with barriers to decision-making at the end of life. Objective: To apply the principles of complexity science in examining the extent to which transitions to end-of-life care can be predicted by physician, family, or patient characteristics; outcome expectations; and the evaluation of treatment effectiveness. Methods: A descriptive, longitudinal study was conducted in 3 adult intensive care units (ICUs). Two hundred sixty-four family surrogates of patients lacking decisional capacity and the physicians caring for the patients were interviewed every 5 days until ICU discharge or patient death. Measurements: Characteristics of patients, physicians, and family members; values and preferences of physicians and family; and evaluation of treatment effectiveness, expectations for patient outcomes, and relative priorities in...

Research paper thumbnail of When Patients Do Not Have a Proxy: A Procedure for Medical Decision Making When There Is No One to Speak for the Patient

The Journal of Clinical Ethics

Research paper thumbnail of Associations between Symptoms with Healthcare Utilization and Death in Advanced Cancer Patients

Introduction: There is limited data about assessments that are associated with increased utilizat... more Introduction: There is limited data about assessments that are associated with increased utilization of medical services among advanced oncology patients (AOP). We aimed to identify factors related to healthcare utilization and death in AOP. Methods: AOP at a comprehensive cancer center were enrolled in a Centers for Medicare & Medicaid Innovation program. Participants completed the Edmonton Symptom Assessment Scale (ESAS) and the Functional Assessment of Cancer Therapy – General (FACT-G) scale. We examined factors associated with palliative care (PC), acute care (AC), emergency room (ER), hospital admissions (HA), and death. Results: In all, 817 AOP were included in these analyses with a median age of 69. They were generally female (58.7%), white (61.4%), stage IV (51.6%), and represented common cancers (31.5% GI, 25.2% thoracic, 14.3% gynecologic). ESAS pain, anxiety, and total score were related to more PC visits (B = 0.31, 95% CI [0.21, 0.40], p < 0.001; B = 0.24 [0.12, 0.36]...

Research paper thumbnail of Longitudinal patterns of resource use in chronically critically ill

Research paper thumbnail of Stem Cell Transplant and Palliative Care: Joining Forces to Improve Survivor Quality of Life

Biology of Blood and Marrow Transplantation, 2020

Research paper thumbnail of Recruitment Strategies for Nurse Enrollment in an Online Study

Nursing Research, 2019

Background: While there is a great deal of literature regarding effective recruitment and challen... more Background: While there is a great deal of literature regarding effective recruitment and challenges of recruiting specific patient populations, there is less known about best practices for recruitment of nurses as study subjects. Objectives: The purpose of this paper is to report our experience with recruitment and retention for a randomized trial of an online educational program to prepare oncology nurses to discuss oncology clinical trials with patients. Methods: The study population included currently employed oncology nurses with direct patient interaction. There were three phases of this study: (1) qualitative interviews; (2) a pilot test; and (3) the randomized trial. Phase 3 was rolled out in five waves of recruitment. The distinct phases of the study-and the gradual roll out of recruitment during Phase 3-allowed us to test and refine our recruitment and retention methods for the randomized trial. Upon analysis of our response rate and attrition after the first wave of recruitment in Phase 3, we made several changes to improve recruitment and retention, including adding incentives, shortening the survey, and increasing the number of reminders to complete the program. Results: The response rate was higher when we used both email and U.S. postal mail solicitations. After the first wave of recruitment in the final phase, changes in our strategies did not increase our overall response rate significantly; however, the rate of attrition following baseline declined. Discussion: Recruitment planning is an important component of successful clinical research. The use of the Internet for both recruitment of subjects and testing of interventions remains a costeffective and potentially high yield methodology. Our research demonstrated several successful approaches to yield increased participation and retention of subjects, including seeking formal relationships with professional organizations as sponsors or supporters, providing meaningful incentives to participants, keeping surveys or questionnaires as short as possible, and planning multiple follow-up contacts from the outset.

Research paper thumbnail of Comparing cognitive load levels among family members of the critically ill exposed to electronic decision aids

Applied Nursing Research, 2019

Cognitive load predicts one's ability to process information and learn from decision support inte... more Cognitive load predicts one's ability to process information and learn from decision support interventions. The present study compared intrinsic and extraneous cognitive load levels resulting from exposure to two different electronic decision aids. A convenience sample of ninety-seven surrogate decision makers for critically ill patients were randomly assigned to receive either a single dose of a video-based or avatar-based decision aid. Intrinsic and extraneous cognitive load levels among recipients of the video-based decision support resource were lower than recipients of the avatar-based decision support resource. After controlling for age, the observed differences in intrinsic cognitive load were not significantly different, whereas the observed differences in extraneous cognitive load remained. Extraneous cognitive load is a modifiable factor to consider for future developers of decision support interventions that may determine the efficacy of efforts to support patients and family members with decision making.

Research paper thumbnail of Coping Strategies and Posttraumatic Stress Symptoms in Post-ICU Family Decision Makers

Critical care medicine, Jan 17, 2015

To assess the coping strategies used by family decision makers of adult critical care patients du... more To assess the coping strategies used by family decision makers of adult critical care patients during and after the critical care experience and the relationship of coping strategies to posttraumatic stress symptoms experienced 60 days after hospitalization. A single-group descriptive longitudinal correlational study. Medical, surgical, and neurological ICUs in a large tertiary care university hospital. Consecutive family decision makers of adult critical care patients from August 2012 to November 2013. Study inclusion occurred after the patient's fifth day in the ICU. None. Family decision makers of incapacitated adult ICU patients completed the Brief COPE instrument assessing coping strategy use 5 days after ICU admission and 30 days after hospital discharge or death of the patient and completed the Impact of Event Scale-Revised assessing posttraumatic stress symptoms 60 days after hospital discharge. Seventy-seven family decision makers of the eligible 176 completed all data ...